Thursday, April 5, 2007

Disrespectful Medical Treatment, Part 2

Angela Kennedy, mother of a CFS patient, and founder of The One Click Group, responded at length to the article on disrespectful medical treatment.  I'll share a few paragraphs of her commentary:

I do feel that even these strategies may not
prevent the terrible problems people with this group of illnesses
experience with their doctors, because of social structures and
distal power relations around medical arrangements in Western
societies, beyond the patient's control.

More importantly, I think articles like this do have the potential
unfortunate effect of putting the onus on the patient to change
behaviour- so that when the patient-doctor encounter is STILL
problematic, the implication is that the patient has not done things
right. 

I say this from experience (last week actually! and it's not the
first time). And I'm not even an ME/CFS/FMS sufferer. <major snip>

I'm not saying don't bother employing certain strategies- I'm just
saying one may still come a cropper, and it is unlikely to be within
your control. If this happens, while learning from the experience,
one should NEVER blame oneself, as this is counter-productive, and
likely to be an inaccurate judgement of the situation. 

I frequently see on these boards similar experiences, where
doctors or others are using behaviour designed to intimidate or
manipulate patients into not asserting their needs.


Research is being done on the power relations within medical
settings, how these are abused by doctors and others etc. I am not
trying to be anti-doctor, but a lot of abuse of patients is
institutionalised, and doctors should be accountable for their
behaviour, which in actuality rarely occurs. This is a difficult
area, because of the status and privilege acquired by one group (the
medics) and the lack of same of another (patients- especially with
difficult to diagnose chronic illness).

Like Angela, I've heard plenty of stories of dismissive doctors from CFS patients and have some of my own. 

Although I've been told by some doctors that I give a darn good medical history, I was told by another doctor "nothing you said made sense".  The information I was giving him didn't fit with what he wanted to hear, therefore, he had to "put the onus on the patient" -- the problem wasn't that he'd made a wrong diagnosis, the problem was with me not saying the right things to fit with the diagnosis he wanted to make.  As Dr. Groopman's book describes, he ignored any information that contradicted his initial diagnosis.  And put the blame on me when the wrong pills that he prescribed for the wrong diagnosis didn't cure me, which was, actually, proof that the diagnosis was wrong.

Angela makes a good point, that blaming yourself doesn't fix the problem, which is actually between the doctor's ears. 

Since doctors don't seem inclined to make their colleagues accountable, patients must.  If a doctor treats you disrespectfully, leave his practice and make sure he knows why you are leaving.  Then make sure other people know why, too.  Track down websites like RateMD.com and go public with your complaints.  

The state medical board took the position that since my doctors hadn't killed me, hadn't amputated the wrong limb, "no harm, no foul".  (Never mind that I've been told I'll never work full-time again as a result of the malpractice.)  As a result, the medical board's records reflect "no complaints", so there is nothing there to warn anyone away from a doctor that a friend and I both had the same attitude problem with.  But websites like RateMD aren't run by doctors, so they're not going to cover up the truth that some doctors should be avoided.

If you're willing to take the chance, sue the doctors.  If nothing else, it'll get your name into the public record as someone who had problems with that doctor as a warning to other patients.  The next time my former doctor is sued, I expect to be contacted to testify that falsifying medical records is his "pattern and practice", which will make the penalties that much harsher because he's done it before, been sued over it before, and didn't take corrective action.

Wednesday, April 4, 2007

Disrespectful Medical Treatment

Disrespectful Medical Treatment and Tips For Working With Your Physician
by Jenny Fransen, RN
http://www.immunesupport.com/library/showarticle.cfm/ID/7878

(excerpts)

Unfortunately, during this pre-diagnosis period, many people have met with countless healthcare professionals who were insensitive, disrespectful, uneducated, and who blamed the patient for their pain. They were told they were crazy, “It’s all in your head,” and other damaging comments.

Guilt and shame are also painful emotions felt by many people with Fibromyalgia as a response to disrespect and blame by medical professionals. They are the feelings “I must be bad because I have this,” or “I must somehow be at fault for having this.”

If you have had this experience, it is important for you to know you are not to blame for your symptoms. You are not crazy. You have a real medical condition, and you deserve respectful medical treatment. The damaging comments that were directed toward you were completely inappropriate. You have a right to be angry about this mistreatment.

How can you express your anger toward those who have hurt you? You could write them a letter and express how their treatment hurt you, how you now have received a correct diagnosis, and what they could have done which would have been more helpful.

Lastly, you must not remain under disrespectful medical care. It will only continue to harm your sense of well-being, fuel depression and anger, and continue the cycle of distrust toward medical professionals. You deserve respectful care, and you must have it.

* * * *

I made sure that my doctors were made aware that their incompetence had permanently affected my health.  Proper treatment -- addressing the pain and/or resulting insomnia -- almost certainly would have gotten me back to work within a few months.  That treatment was repeatedly refused by doctors who believed "it's all in your head" and prescribed useless  anti-depressants instead, and it is now the specialist's opinion that I will never work full-time again because I didn't get proper treatment early on.

And I have made sure that other patients are aware that believing that if you persist, eventually your doctor will listen to you and give you the right prescription, can be detrimental to your health.  The doctor who refuses to believe you now will stubbornly refuse to believe you no matter how many times you repeat yourself.  You will never "prove" to him that he is wrong.

Much better to do what I did not -- give him ONE second chance and then look for a new doctor who takes a different approach.  By the time I finally realized that that doctor was never going to give me the pills I asked for, that he didn't know the first thing about CFS (not even how to diagnose it), it was too late, and I have to live with the consequences.

He was unable to admit to himself, or to me, "you would be better off with another doctor".  His erroneous belief that I was just imagining things because I didn't want to work cost me all chance at State Disability benefits, and impacted my SSDI application as well.  No matter how many other doctors, who know CFS/fibro is real and incurable, say that I cannot work, the judge keeps going back to the first doctor's false statement to support denying my benefits. 

Don't let that happen to you! 

Co-Cure.org has a list of "good doctors" for CFS/fibro.  RateMD.com lets you warn others off bad doctors (or praise a good one).

I may not be able to get myself back to good health, but I can make sure that the same doctors don't do the same thing to other patients.  Maybe the doctors will read the studies I cited showing that exercise and anti-depressants don't work for CFS; I wouldn't bet on it.  But I can steer other patients away from them.

Monday, April 2, 2007

More from Lakeland, Florida "The Ledger"

http://www.theledger.com/apps/pbcs.dll/article?AID=/20070401/NEWS/704010412&SearchID=73276846005614

'Gray Area' Diseases Prove Difficult to Treat, Understand

Fibromyalgia, chronic fatigue syndrome debilitate victims amid controversy,
dispute in the medical community over unclear causes.

By Gary White
The Ledger, Lakeland, Florida

'YOU DON'T LOOK SICK'

Back when she was a hard-charging sales manager for a large corporation,
Martha Grierson once encountered an employee diagnosed with fibromyalgia, a
disorder about which Grierson knew nothing. The man said his condition
wouldn't allow him to maintain his challenging workload and requested
lighter duties.

Grierson joined her fellow managers in aggressively questioning the man,
concurring with the general assessment that he was a shirker unwilling to
work as hard as everyone else.

In the subsequent two decades, as fibromyalgia has largely taken over
Grierson's life, the Winter Haven resident has often thought of that man.

"I'm so ashamed, looking back, that I was one of the people who sat in on
that management meeting and said terrible things," said Grierson, 52. "I'm
so sorry for it; I didn't know any better. Little did I know I would be
getting the same thing and be given the same response."

Grierson's original skepticism makes it possible for her to understand, if
not easier to tolerate, the questioning attitudes many people hold toward
fibromyalgia, perhaps the most prominent in a category of illnesses with
unclear causes, imprecise diagnoses and no cure or clearly effective
treatment options. The maladies - also including chronic fatigue syndrome
and lupus - generate controversy and dispute in the medical community.

The ailments, their vagueness defying the preferred precision of the
medical realm, attract pejorative labels: "gray-area illness" or
"wastebasket diagnosis."

"'Gray-area medicine' can be interpreted as a euphemism," said Dr. Edward
Lubin, a pain-management specialist at Winter Haven's Gessler Clinic, "and
it leads one to think maybe what we're dealing with is … malingering, maybe
we're dealing with something other than a medical condition. But to be
fair, the gray area exists in the minds of physicians and the diagnostic
process, not in the symptoms and suffering of patients. That's not gray;
they're suffering."

Those with the ailments insist their pain is just as real as it would be if
they had cancer, diabetes or any other established and scientifically
verifiable disease with clear causes and treatment regimens.

"Imagine the aching of a really bad case of the flu, then times it about 10
times," said Polk City's Lynn Anderson, 52, diagnosed a decade ago with
fibromyalgia. "Every inch of you hurts. I feel like I'm about 152. There
are days when I feel so old. It makes you feel like you've aged 10 years or
more."

Grierson talked about her case: "For me, one of the symptoms is feeling my
skin is on fire. At times I can't even stand the feeling of clothes on my
skin."

Lakeland's Laura Bodner, another fibromyalgia patient, described her
quality of life on some days as a negative number on a scale of one to 10.
Bodner, who has absorbed dubious reactions from doctors, said three women
in a stretch of five houses on her street have the disorder.

"For something that doesn't exist," she said, "there's an awful lot of
people with it."

Wayne Furse of Winter Haven, who has been diagnosed with fibromyalgia, says
he takes 25 prescription pills a day, including four types of painkillers,
which provide little relief. (SCOTT WHEELER/The Ledger (2006))


Diagnosing a mystery

The condition of fibromyalgia appears in the Bible, according to Lynne
Matallana, president of the National Fibromyalgia Association, but the term
itself - literally meaning pain in muscle and tissues - didn't arise until
the 1970s to denote a collection of symptoms including chronic joint or
muscle pain, extreme tenderness, profound fatigue and inhibited sleep. The
NFA estimates 10 million Americans have the often-debilitating disorder,
with women diagnosed at least four times as often as men.

Fibromyalgia presents no markers that show up in a laboratory test.
Diagnosis is based on a patient's reported symptoms and a physical exam to
detect persistent pain or tenderness in at least 11 of 18 trigger points
throughout the body. Symptoms can vary and often fluctuate wildly.

Chronic fatigue syndrome (CFS) shares many of the symptoms of fibromyalgia,
and the conditions are considered overlapping, though lethargy rather than
pain dominates in the former ailment. The Centers for Disease Control
estimates more than 1 million Americans have CFS.

The causes of both remain mysterious, and treatment is directed toward the
symptoms - controlling pain and improving function. The ailments are not
considered life-threatening, but the symptoms leave some patients unable to
work and sometimes bed-ridden for long periods.

"We sometimes refer to them as invisible illnesses because you don't look
sick and we don't yet understand the causes," Matallana said.

Dr. Patrick Wood, an assistant professor of medicine at Louisiana State
University, said researchers continue to amass evidence supporting
fibromyalgia as a legitimate medical condition. Functional magnetic
resonance imaging has shown different reactions to cold and pressure in the
brains of people with and without fibromyalgia.

Dr. Roland Staud, a professor of medicine at the University of Florida
specializing in fibromyalgia, said recent research suggests the patients
have a hypersensitivity to pain. It's not that they invent their pain, he
said, but rather their tolerance for pain is much lower than in most people.

But people with chronic pain disorders are hardly freakish exceptions,
Staud said.

"Fibromyalgia is only the tip of the iceberg," he said. "Chronic
musculoskeletal pain is enormously prevalent in the population and … the
majority of those don't qualify for the term fibromyalgia but still have
chronic pain. So what we're dealing with is a huge problem that's been
compartmentalized and underestimated for, really, decades now, and we're
just using fibromyalgia as the most extreme representation of these types
of pains."

pain, lethargy and fog

The pain itself can be extreme, according to patients. Carol Edwards, a
registered nurse specializing in fibromyalgia at the Salazar Family Clinic,
was diagnosed with the ailment in 1989 after suffering for four years. She
has experienced dramatic improvement through an experimental treatment but
said the malady nearly derailed her life.

Edwards, 53, said her feet sometimes burned as if she had walked on
scalding coals and her body became so sensitive she couldn't even stand the
feel of asheet on her bare skin. Under such circumstances, she said,
sexual relations become impossible.

"It's not unusual at all for patients to tell me they haven't had sex in
three to five years," Edwards said. "The inability to have sex is a big
issue that's not discussed a lot. Even pain pills don't take away the pain
enough that they're able to enjoy it."

Bodner said her husband "is afraid to touch me because he's afraid of
hurting me." In addition to pervasive aches, she said she endures "fibro
fevers" as well as seizures related to her fibromyalgia.

While many more women than men are diagnosed with fibromyalgia, males are
not immune to the condition. Wayne Furse of Winter Haven has the disorder,
along with a host of others, including diverticulitis, colitis, diabetic
neuropathy, tendinitis, bursitis and heart problems.

Furse, 51, operated a lawn-mower shop before his health problems began
about a decade ago. He had to give up the business and eventually went
bankrupt. He said he takes 25 prescription pills a day, including four
types of painkillers, which provide little relief.

He said a rheumatologist diagnosed him with fibromyalgia based on his
symptoms of widespread body pain and promptly told him the condition could
not be treated.

"After that one doctor gave me that (diagnosis), several other doctors,
they all just laugh when I say that," Furse said. "They say, 'That doesn't
mean anything. It means he (the doctor) doesn't know what's wrong with you.'"

Millie Haddad of Davenport, diagnosed 16 years ago with chronic fatigue
syndrome, said she now sleeps 18 to 20 hours a day. Lakeland resident
Teresa Kucera, whose chronic fatigue overlaps with fibromyalgia, said she
tries to accomplish one task a day, such as cleaning the bathroom. Kucera
is bothered by "fibro fog," a common symptom of fibromyalgia that forces
her to write notes to remind herself of the most basic matters.

"It's like your motor quits going," said Kucera, who is 54 but said she
feels more like 90. "You just find yourself like, 'What happened?' It's
just a slow decline."


Holding on

Chronic ailments with no clear prospect for reversal can have a devastating
effect on quality of life, and depression among patients is common.

"I have no meaning to my life," Kucera said. "It's just read and think
about things I'd like to do. I would imagine there's a lot of suicides from
these things; I think a lot of people give up and find no worth in their
lives. Sometimes I think it would be just easier to die. It's not something
you can just think yourself out of. I try to hold onto God; that's what
keeps me from completely going over the edge."

Grierson managed 23 employees in her previous corporate job, dressed in
business attire and had the use of a company car before fibromyalgia
prematurely ended her career. She used to draw her identity largely from
her career, and when that ended, she was left wondering who she was.

Bodner, who was forced to give up her work as a security trainer, said
suicide has crossed her mind.

"I've gotten to the point I've thought about it quite a few times," Bodner
said, "and then my daughter will bring my grandsons over or my husband will
come in and put his arms around me, and then it's like, 'Yeah, it's worth
it (to live).'"

Edwards, the nurse, said she has coaxed several suicidal patients into
handshake agreements to give her treatment method six months to show results.

The National Fibromyalgia Association doesn't keep statistics on suicides,
but Matallana, the group's president, said she knows of people who took
their lives because of the ailment. But she said gradual medical acceptance
has lessened the sense of desperation.

"Once the diagnostic criteria were accepted and once people began to
understand this illness … you don't hear of people feeling as hopeless as
you used to," Matallana said. "I haven't heard of a suicide case for many
years. I think we are living in a time when there is much more hope. That's
why we work so hard … to let people know they are not alone, to hang in
there, things will get better."

Patients say Polk County lacks an active support group for people with
chronic pain disorders, but some find comfort in online communities. The
confounding nature of the ailments, and the persistent skepticism
surrounding them, creates a need for validation in many patients.

Grierson has discovered an informal support group among fellow patients at
her doctor's office.

"I began to meet these wonderful women you would see week after week in the
waiting room," she said. "You definitelydepend on seeing each other, and
you share these intimate details of your life. You find out they're feeling
the same way, and it definitely helps an awful lot. That helps (guard)
against that feeling that it's all in your head."

Grierson said she often thinks of her first experience with fibromyalgia in
the early 1980s, when ignorance about the ailment made her unsympathetic
toward an employee in her company who had recently been diagnosed.

"I look back and just shudder about the way I spoke to that poor young
man," she said. "I was a horrible human being, and today I just can't
imagine treating somebody that way. It (fibromyalgia) has made me a much
better human being. If I had to lose everything and go through a lot of
suffering to gain that compassion, as trite as it sounds, I think it had to
be worth it."

Still, she added, "I wish there had been an easier way to get there."

http://www.theledger.com/apps/pbcs.dll/article?AID=/20070401/NEWS/704010426/1004/NEWS08

Doctors Differ in Approaches Used In Treating Malady

By Gary White
The Ledger

ABOUT THIS SERIES
Fibromyalgia, chronic fatigue syndrome are hard to treat and difficult to
understand.


Monday: Mystery ailments derail lives and expose sufferers to hostility
from loved ones and doctors.
The treatment for fibromyalgia varies according to the doctor administering
it. Patients often wind up seeing a rheumatologist or a pain-management
specialist, and the most common medical approach involves reducing the
symptoms - widespread muscle or joint pain, weakness, burning sensations,
extreme skin sensitivity and fevers - and increasing the patient's capacity
for activity.

Dr. Edward Lubin, a pain-management specialist at Winter Haven's Gessler
Clinic, said the most important element of his treatment comes at the
beginning. Many patients arrive hoping for a sudden and permanent fix, and
Lubin stresses the need to regard fibromyalgia as a chronic disorder, like
diabetes or hypertension, lifelong ailments with symptoms that can be
managed through consistent treatment.

"The first thing they need to understand is the adage, 'Chronic pain is
chronic,'" Lubin said. "There are patients who will never be able to wrap
their arms around the chronicity or durability of their pain and how much
we understand it to be chronic. That makes for at times a very difficult
practice."

Lubin, who trained at Yale and Harvard, uses various methods to combat the
symptoms of fibromyalgia and similar maladies, including nerve blocks,
nerve excision, steroid injections, radiofrequency ablation and various
kinds of injections into trigger points, as well as pain medications
ranging from anti-inflammatories to morphine.

He also sometimes prescribes antidepressants or refers patients for
psychiatric counseling. The Food and Drug Administration has not approved
any medications specifically for fibromyalgia, meaning any drugs are
prescribed "off-label."

Dr. Roland Staud, a professor at the University of Florida's school of
medicine, said several drugs are nearing submission to the FDA for the
treatment of fibromyalgia
. Staud is also involved in studies of cognitive
behavioral therapy, which he considers an essential element in treating
chronic pain. There is continuing scientific debate over the pain centers
stimulated by fibromyalgia, and Staud focuses his research on the spinal
cord as the source of pain transmission.

"When it is difficult on the physical level to reduce pain generation, then
we need to also affect the central mechanism, which is, for example,
negative mood, anxiety, fear, anger - all these things come into play in
chronic syndromes like fibromyalgia," Staud said. "This acknowledges the
mind-body connection that everybody has. It doesn't just marginalize this
as purely a psychological syndrome."

Dr. Patrick Wood, an assistant professor of medicine at Louisiana State
University, has also devoted his career to studying chronic pain disorders.
In Wood's view, fibromyalgia results from the failure of patients' brains
to make and use dopamine, a chemical involved in transmitting signals
between cells.

Wood said experiments with drugs that mimic the effects of dopamine have
shown promise, and he stressed the difference between this approach -
targeting the source of pain - and the prevalent strategy of managing the
symptoms.

"Our treatment of the symptoms has been sort of a shot in the dark because
we don't really understand what it is we are treating," Wood wrote in the
January issue of The Journal of Pain.

One Lakeland doctor takes an entirely different approach. Dr. David
Reifsnyder, an infectious disease specialist, suggests many patients
diagnosed with fibromyalgia and similar maladies actually have an
undiagnosed viral or bacterial illness, such as chronic mononucleosis,
chronic mycoplasma, Lyme disease or even cat scratch disease. He said in
other cases he finds a simple cause of the symptoms - for example, a bad
reaction to a medication.

"In my own personal experience, (in) about 95 percent of the people I see
with either chronic fatigue syndrome or fibromyalgia, the cause is found,
and the vast majority of those respond to treatment and recover
completely," Reifsnyder said.

He said many of his patients are referred by other local doctors, who are
happy to pass along patients with seemingly intractable ailments.
Reifsnyder has long-term patients who now live as far away as California
but still come to Florida to see him.

Reifsnyder, who operates a solo practice, devotes a full hour to a
patient's first visit to take a thorough medical history, looking for clues
to any undiagnosed chronic illnesses.

"Often patients come out of his office crying with relief," said
Reifsnyder's wife, Nellda, who works in his office. "One patient said,
'This is the 44th doctor I've seen.' They're very angry. They say no one
has listened to them."

This is actually a very common complaint among CFS/fibro patients -- as Dr. Groopman's book says, doctors leap to conclusions in the first few seconds of an appointment and thereafter don't feel they need to listen to the patient.  Even when I was struggling to continue working, I was being tagged as a malingerer by doctors who didn't listen to the fact that I was continuing to work as much as I could, but couldn't manage a full-time schedule.

FIBROMYALGIA

What is it?: A chronic pain illness marked by widespread pain, stiffness
and tenderness in muscles; general fatigue; sleep problems; burning
sensations; extreme skin sensitivity; and memory problems. Symptoms often
fluctuate widely in intensity.

How is it diagnosed?: No laboratory tests confirm fibromyalgia. Diagnosis
is based on patient histories, self-reported symptoms and a physical
examination. The main diagnostic guidelines are widespread pain in all four
body quadrants for at least three months and tenderness or pain in at least
11 of 18 specific points.

Who has it?: The National Fibromyalgia Association estimates 10 million
Americans have fibromyalgia, at least 80 percent of them female.

Prognosis: Not considered life-threatening.

Treatment: Most doctors focus on symptoms, reducing pain and increasing
activity through medication and physical therapy. Other options include
sleep management, nerve blocks, psychotherapy, antidepressants and
acupuncture. An experimental treatment used at a Mulberry clinic involves
the non-prescription drug guaifenesin and the avoidance of plant-based
products.


CHRONIC FATIGUE SYNDROME

What is it?: An illness typified by profound fatigue not lessened by rest,
as well as muscle pain and memory or concentration problems.

How is it diagnosed?: The syndrome has no specific diagnostic test.
Diagnosis emerges from a patient history of severe fatigue lasting at least
six months and the presence of at least four of the following symptoms:
substantial impairment in short-term memory or concentration; sore throat;
tender lymph nodes; muscle pain; multi-joint pain without swelling or
redness; headaches of a new type, pattern or severity; unrefreshing sleep;
and post-exertional malaise lasting more than 24 hours.

Who has it?: The Centers for Disease Control estimates more than 1 million
Americans meet the definition for CFS.

Prognosis: Not considered life-threatening.

Treatment: The standard approach aims to reduce symptoms and improve
physical functions. Doctors might recommend lifestyle changes, including
avoidance of overexertion, reduced stress, dietary restrictions, gentle
stretching and nutritional supplementation, as well as medication to treat
sleep, pain and other specific symptoms.


LUPUS

What is it?: A chronic autoimmune disorder that can affect almost any part
of the body, most often the joints, skin, kidneys, heart, lungs, blood or
brain. Symptoms often mimic fibromyalgia and other illnesses.

How is it diagnosed?: No single laboratory test determines the disorder.
Diagnosis is based on a medical history finding at least four of 11
symptoms, including rashes, inflammation of the heart or lung lining,
seizures, arthritis and blood abnormalities.

Who has it?:The CDC "conservatively" estimates lupus affects 239,000
Americans, about 90 percent of them women.

Prognosis: The disorder can cause fatal complications. The CDC estimates
more than 1,000 Americans die from lupus each year.

Treatment: Varies depending on the organs affected. Anti-inflammatories,
sometimes including steroids, anti-malarial medications and drugs that
suppress the immune system are often prescribed.

GULF WAR ILLNESS


What is it?: A general label for an array of health problems experienced by
veterans of the Persian Gulf War of 1990-91. Symptoms include chronic
obstructive pulmonary disease and other lung problems, cancer, dizziness,
fatigue, reduced muscle function and skin problems.


How is it diagnosed?: The syndrome itself is not diagnosed. The Department
of Veterans Affairs medical facilities make individual determinations based
on symptoms and service.


Who has it?: About 30 percent of the 700,000 Americans who served have
registered in an illness database established by the American Legion.


Prognosis: Reports have suggested higher than normal rates of premature
death. As of 2005, figures from the Veterans Administration showed at least
11,620 of the roughly 700,000 deployed troops had died since returning.
More than 250,000 had filed for medical benefits.

Some Doctors, Friends, Relatives Dismiss Sickness

URL:    http://www.theledger.com/apps/pbcs.dll/article?AID=/20070402/NEWS/704020367/1004


Some Doctors, Friends, Relatives Dismiss Sickness

   As a teenager, Lakeland resident Jiwa Farrell was diagnosed with lupus,
   an autoimmune disease that affects mostly women and often mimics
   fibromyalgia and chronic fatigue syndrome.

It's easy to make personality judgments about people with fibromyalgia and
other chronic pain disorders. The patient's current lethargy and
inactivity can yield assumptions of lifelong laziness and aversion to
work.
Those diagnosed with the ailments say it's a common and frustrating
misconception.

"I don't think I have ever met a person with fibromyalgia who is lazy," 
said Lynne Matallana, president of the National Fibromyalgia Association. 
"Quite the opposite."

Matallana said a high percentage of fibromyalgia patients are "Type A" 
personalities who were high-achieving professionals before the illness
struck.
Matallana, 51, worked as a partner in a prominent advertising firm
and was athletic before she became ill in the early 1990s, eventually
spending two years in bed after being wrongly diagnosed with lupus.

Local patients have similar backgrounds. Martha Grierson of Winter Haven
worked long hours as a sales manager for a large corporation before
fibromyalgia prematurely ended her career. Lynn Anderson of Polk City used
to show horses in competitions, though fibromyalgia now prevents her from
even mounting a horse.

Lakeland's Laura Bodner, another fibromyalgia patient, formerly worked as
a firefighting trainer and exercised five days a week. Davenport resident
Millie Haddad was a nurse with a side business until being diagnosed with
chronic fatigue syndrome, and Teresa Kucera, a Lakeland resident with the
same disorder, worked as a medical assistant and said she "used to be like
a tornado."

Government medical agencies have recognized fibromyalgia and CFS as
legitimate disorders in the past decade or so, but patients say skepticism
remains commonplace, especially among general practitioners. Every
fibromyalgia patient seems to have at least one story of rude or
dismissive treatment from a doctor.

Grierson and other local patients said doctors have suggested their
problems are psychological rather than physical. "I've actually had a
doctor tell me I need mental health help, that it was all somatic, which
is a kind way of saying it's all in your head," Grierson said.

Bodner, 45, described the hostility she received from a local doctor after
seeking a refill of Darvocet, a prescription pain medicine.

"My daughter got real upset because she sees how much pain I'm in, and she
goes, 'Can't you just give her something that's going to help her instead
of Darvocet?'" Bodner said. "And (the doctor) said, 'I don't even like
giving her Darvocet because I think she's overreacting. Somebody who's got
fibromyalgia shouldn't be in this pain.' My daughter just went off on the
doctor. She was saying, 'You know, I wish you could just have it for one
week so you could see what my mother goes through.'"

Matallana said the lack of compassion and understanding from doctors
compounds the physical and emotional distress of the illness itself. "I
know in my case I just had the idea if you got sick you went to a doctor
and they treated you," Matallana said. "I never, ever imagined someone
would question my pain and my inability to function. That was to me almost
as bad as enduring the physical symptoms."


Confusion, skepticism

The transformation of dynamic people into suffering wrecks, without any
apparent cause, prompts confusion and questioning. Fibromyalgia patients
say even friends, relatives and spouses find it hard to accept the reality
of what has been called an invisible illness.

"Even my family was skeptical at first," said Randy Jones, a Dade City
resident who receives treatment for her fibromyalgia at Salazar Family
Clinic in Mulberry. "Even my husband, it was like, 'Maybe you just don't
want to get out of bed.' "

Jones, 60, admitted she had doubts about fibromyalgia before the illness
struck her in 2000, leaving her incapacitated for long periods. "Nobody
walks in your body but you, and how can one person say what another person
is feeling?" she said. "Why would I want to do this to myself?"

Grierson likewise has had friends and relatives question her condition.
"Some I thought would understand have accused me of being drug-seeking, of
being lazy, of doing this for attention," she said. "It's just awful the
things people will say because they don't understand
and it's not a common
thing and you don't carry scars on the outside of your body. It makes
coping with what's wrong with you that much worse because if you hear it
enough you begin to think maybe you are a little crazy. That's the
insidious thing of it."

If the medical world has been slow to accept fibromyalgia and other
chronic pain disorders, it's perhaps no surprise patients describe having
difficulties with medical coverage and government disability programs.

Grierson said she faced constant battles with her insurance company over
payments for treatments, and at one point when she lived in Pennsylvania a
doctor sued her over the plan's failure to pay medical bills. She had
equal trouble getting approved for Social Security Disability Income,
going through two years of denials before she hired a lawyer who helped
her prevail in a court hearing.

Bodner said she has twice been turned down for SSDI since applying last
year. She has enlisted a lawyer to help her push for the government
supplement.

Anderson has Medicare coverage, but she said the plan doesn't cover
massage therapy, the only treatment that offers her significant relief
because the effect is temporary. Her sister, Terry Anderson, became a
massage therapist after observing Lynn's ordeal, and she sometimes travels
from Pinellas County to offer her services.

Haddad, who required a court hearing before being approved for SSDI, said,
"It took a long time before I was able to collect disability because they
didn't believe this till a lot of doctors started getting the disease
themselves."


'The F-Word'

Dr. Patrick Wood, an assistant professor of medicine at Louisiana State
University, decided to specialize in fibromyalgia in part because it was a
verboten term during his training. As Wood points out, many diseases now
universally accepted - including malaria, asthma and Parkinson's - were
previously dismissed or relegated to non-medical categories.

"When I was in medical school, it was theF-word," Wood said. "You didn't
even say it around other physicians. I was very intrigued to think there
was a medical entity you could choose not to believe in, like a ghost or a
fairy... I've always kind of stuck up for the underdog, and fibromyalgia
patients are kind of the underdogs of the medical world." Despite recent
progress, Wood said, "I've been at the same institution for 10 years, and
there's still tremendous hostility toward the disorder (fibromyalgia) and
toward the diagnosis from people who certainly should know better."

Chronic pain patients and their advocates cite several factors behind the
lingering skepticism among many doctors. One is the lack of verifiable
causes. The ailments arise gradually in some patients, while others point
to a specific traumatic event as the trigger. The trauma can be physical -
in Anderson's case, being kicked in the face by a horse - or emotional,
such as a divorce or the death of a spouse.

Advocates say the varying intensity of symptoms also fosters doubts. "The
illness can wax and wane, and when people feel better oftentimes they push
themselves so others see them up doing what normal people would do, and
the next week they're back in bad," Matallana said. "That doesn't make
sense; we think of illness as being continuous."

Wood, noting that doctors dislike uncertainty, said many general
practitioners are loath to admit they don't have an explanation for a
patient's complaints and react by questioning the patient's description.
"I don't think it makes me popular with my colleagues, but we're trained
to be little gods and anything that challenges our god-like capacity we
dismiss," Wood said. "(A doctor) could say, 'There's nothing to
objectively demonstrate you're really sick. How do I know you're sick?'
You have to trust the patient's report, which we're often not willing to
do when it comes to pain."

Patients say it often becomes clear they know much more about their
conditions than the doctors charged with treating them.
Haddad of
Davenport has attended countless seminars on chronic fatigue syndrome
since being diagnosed with it, and she said most doctors dispense merely
obvious advice - eat right, sleep right, lose weight.

"A lot of health-care providers feel uncomfortable because of the limits
of their expertise," said Dr. Roland Staud, a professor of medicine at the
University of Florida specializing in fibromyalgia. "Many physicians
wanted these patients to be seen by psychologists and psychiatrists and
did not feel equipped to deal with this."


A gender issue

Matallana and others say the gender factor also affects perceptions of
fibromyalgia. The preponderance of patients are women, and advocates cite
a long history of medical authorities dismissing female- oriented
illnesses as forms of hysteria. "You have to look back on the medical
community - it has basically been male-dominated," Matallana said. "I
don't think it's something they have done intentionally, but I know when
you have experienced something yourself it's much easier to understand
what it really is."

Lakeland's Jiwa Farrell was diagnosed at age 16 with lupus, an autoimmune
disorder that often mimics fibromyalgia and chronic fatigue syndrome and
disproportionately affects women. "I'm not trying to make this a feminist
movement or anything," she said, "but... it amazes me how many drugs they
have out for ED (erectile dysfunction) all of a sudden, and we haven't had
a new drug for lupus since the '60s."

Fibromyalgia and other chronic pain disorders sometimes occur in family
clusters. For example, Bodner said her two daughters, both in their 20s,
have been told they have fibromyalgia since she received her own
diagnosis, and several other local patients also said relatives share
their ailments. The phenomenon might suggest a genetic component to the
disorders, but to a skeptical mind it can also raise the prospect of
suggestibility.

Confusing matters further, fibromyalgia and related disorders seem
intertwined with psychological components. Many patients exhibit signs of
depression, leading to a chicken-and-egg question about the relation
between psychological distress and physical pain.

"The question that was raised in the past was in what category of medical
illness these symptoms would fall," said Staud, the UF professor. "Many
physicians believed they would fall in the psychological-psychiatric area,
where some physicians believed it was in the purely physical area, and of
course thetruth is halfway in between, because for 200 years we know
there is no mind-body dichotomy.Every illness has these components. To
say someone has a purely psychological illness - this is not an up-to-date
approach."


Patient profiling

Dr. Edward Lubin of Winter Haven's Gessler Clinic said some general
practitioners engage in "patient profiling" when they encounter the
typical fibromyalgia patient - a middle-aged woman complaining of vague
pains. Lubin, a pain-management specialist, also cited the financial
pressures that limit the time doctors spend with each patient,
discouraging a thorough exploration of the patient's medical history and
fostering cynical reactions. "Some physicians have a sketch in their
minds," Lubin said, "so when a patient comes to their office with
complaints that can be treated with either antidepressants or narcotics,
they immediately have a picture in their mind of a patient, and they
either don't explore the nature of it or essentially they punt the patient
to a pain management doctor."

Lubin said some doctors dismiss patients with vague complaints of pain as
hypochondriacs or malingerers, lazy people looking for an excuse not to
work. Lubin said it doesn't help matters that he and other doctors
regularly encounter true malingerers, about whom they must make judgments
to determine government disability payments. "Every doctor is faced with
being a useful idiot, being a tool for somebody who wants to get out of
work," said Lubin, who trained at Yale and Harvard. "I'd rather you fooled
me once and then I could say, 'Shame on you,' rather than try to prevent
my ego from ever being bruised by assuming everyone whoever asked me for a
pill for their pain is a drug-seeker. We can't lose our humanity just
because we're afraid of being hoodwinked."

--------
(c) 2007 The Ledger

* * * *

I've dealt with some doctors who ignored my long history of employment, because all they saw before them was a woman who "doesn't want to work" and "wants to be a housewife", never mind that I've always worked and never wanted to be a housewife.   My husband firmly believed that there was something wrong with me until a doctor planted the seed that the whole problem was that I "wanted to be a housewife and didn't have the guts to tell him I didn't want to work any more."  Instead of standing up to the doctor that he didn't know me very well, my husband bought into it that all women want to be housewives, and started to believe the doctor more than what he saw with his own eyes. 

Unfortunately, we moved for my husband's career, and I wound up with another doctor who, as the article notes, "questioned the patient's report".  I described classic CFS symptoms, but because they didn't match up with the symptoms of depression, he dismissed them, explaining later that "nothing you said made sense".  Had he known the symptoms of CFS, what I told him would've made perfect sense, but as soon as I revealed my marital status was Divorced, he leapt to the diagnosis of post-divorce depression, and nothing would budge him off that, not even reports that the anti-depressants weren't helping.  His ego required him to believe that I was mistaken, not that he was mistaken.

 
 

Sunday, April 1, 2007

What's being covered up?

http://ncf-net.org/forum.htm

"In this important essay, the NCF examines and reports on keynote discrepancies between medical observations made during the time period of the Lake Tahoe outbreak (1984 - 1986) and what was published in the Annals of Internal Medicine journal article (1992) on the Tahoe outbreak itself. One discrepancy is further highlighted and exacerbated by recently published research (2006) that not only confirms the initial Tahoe observations but expands on them as well. The NCF questions the rationale as to why the early medical test results failed to make it to the Annals article and ultimately to the general patient population. The NCF's research is discussed within the context of these scientific observations."

"Not only did Cheney's patients suffer from a B-cell deficiency but several of these patients produced abnormally low levels of several classes of immunoglobulins as well. Johnson stated, "One of the most striking immunological aberrations Wormsley observed, however, was abnormal ratios of T-cell subsets. T-cells are a major category of immune system cell; they regulate production of disease-fighting antibodies. Two primary T-cell subsets are "helper and suppressor" T-cells, which boost and suppress antibody production, respectively. 

In AIDS the normal ratio tends to be dramatically skewed in favor of suppressors. Since this finding is virtually diagnostic of AIDS, Cheney and Peterson were curious to know the T-cell subset profile in the Tahoe malady....Wormsley's result showed that four of five Tahoe patients did have abnormal helper-suppressor ratios. But, unlike the ratios in AIDS sufferers, they were low in the numbers of suppressor cells. Instead of one-to-two or one-to-three, which are typical of healthy people, the Incline patients had helper-suppressor ratios of five-to-one, ten-to-one, and higher. It was the mirror image of AIDS."

[Cognitive Behavioral Therapy] "is based upon the thinking that one's illness is due to the wrong way of viewing their lives or of past bad experiences.  One survey done by the 25% ME Group found CBT was the treatment that was the most unhelpful one offered with only GET (Graded Exercise Therapy) getting worse results.  These are the two treatments suggested by our own Centers of Disease Control and Prevention (CDC).  Both are unproven and GET has been proven to actually be harmful to pateints thatresult in relapses that have been found to last weeks, months, or even years."

"The CDC, from the year 2000 to 2003, has had committee meetings to change the definition of CFS in order to make it a mere psychological fatiguing illness and to bypass the much more stringent 1994 research criteria that physicians have relied upon.  They published a paper in 2005* that watered down "CFS" and eliminated any thought of it actually being M.E. "

"The first carefully documented epidemic noted by a medical journal occured in Los Angeles in 1934.  Doctors, nurses and patients got sick during a polio outbreak.  Yet, they didn't have polio.  They had muscle weakness (no, it wasn't dubbed "fatigue" then), invountary muscle contractions, muscle twitching, myoclonic problems, sensory abnormalities and parathesias, vasomoter changes and some had muscle inflammation.  It was called benign poliomyelitis.  It is now called CFIDS (chronic fatigue immune dysfunction syndrome) or CFS (chronic fatigue syndrome) or ME (myalgic encephalomyelitis) or a few other names.  There are patients alive today who still suffer from this original outbreak.  They have been diagnosed, more recently, with ME.  Although the medical journal reported on the 200 that got sick at the Los Angelos County Gereral Hospital, many more in that area got sick that same summer. A U.S. Health Bulletin described the chronic polio-like illness as "atypical polio." The same year, an epidemic was taking place in England at the Royal Free Hospital.  Those who are still living have been rediagnosed with ME."

[Although only 240 people have been infected with bird flu and all of them worked with birds] "CDC has a lot to say about an impending "bird flu epidemic" that they want to try to stave off while they ignore an epidemic that is already among us and has been for years."

 

 

Yes, what about the millions of people who have been suffering with CFS for the past quarter century?  I've had it for 20 years.  But because it is not a virus that is commonly tested for, I've gotten diagnoses of anxiety, laziness, depression, hating my husband, hating my job, and defrauding the disability system. 

NCF recommends the following blood tests: Immune/Lymphocyte profile via flow cytometry - Absolute and percentage for each of the following cell markers:
CD3 - Total Lymphocytes
CD4 - Helper T-cells
CD8 - Cytotoxic/Suppressor T-cells
CD19 - Mature B-cells

These tests have not been done on me, probably because doctors who are convinced I'm just a depressed divorcee or anxiety-ridden woman or housewife wannabe are afraid that they'll see objective proof that CFS is real. 

While those tests were not done, I did have, as part of the application process for a fibromyalgia clinical trial, a C Reactive Protein test, which tests for infection or inflammation.  Normal is 5.  My first test was a 28.  The result was so "off the charts" [doctor's words] that he was convinced it had to be lab error.  I went back in, had the test re-done, and the nurse used the words "sky high" -- the re-test was even higher, 30 -- 6x normal.  That kicked me out of the clinical trial, but gave me the objective evidence I needed for my disability application. 

Unfortunately, the judge, who also espouses the theory that there's nothing physically wrong with CFS patients, simply ignored the test results.  There's not a word in his decision about this piece of objective evidence that could not be discounted as "lies" and fakery.  Clearly, he hopes that the Court of Appeal will not look through every page of the 6" file to find the two pages that prove that this is objectively a physical illness and not some scheme to Get Rich Quick on the pittance that Disability pays.

I'd get rich a helluva lot quicker if I could go back to work.  This morning, I saw my old job title advertised at $56,000 -- more than four times what I'd be getting from Disability.  Plus, that job includes medical/dental and retirement plan contributions ... something I won't get with Disability.  Assuming I ever get Disability, since it's clear that this judge will never consider any evidence of physical illness.  Any evidence -- whether my testimony, friends' testimony, or doctors' reports -- that says there's something physically wrong with me that is visible to others is simply dismissed as "not credible".  The blood test results will never see the light of day if he can help it.  Putting thousands of dollars of immune function testing and brain scans on my credit card probably wouldn't help me, either -- more than likely, he'll stubbornly refuse to acknowledge that evidence exists, too.

Just like CDC, to this day, slips into their press conferences that the real problem in CFS is not the virus that Elaine DeFreitas identified 20 years ago, but things like "stress" and "child abuse".  The real truth -- the truth that's been known to doctors who actually treat the patients -- has to be swept away in order to make believable the notion that CFS can be cured with anti-depressants and talk therapy, and is nothing more than an emotional basket case who cannot deal with real life and takes to her bed.

The real truth is that most CFS patients, including this one, drag themselves to work while getting ever sicker, and take to their beds only when it is physically impossible for them to stand up long enough to get dressed.  The real truth is that the patients involved in the CFS epidemics report a virus or other infectious onset, not psychological problems.  The real truth is that I got a virus with a high fever BEFORE I got married, so it's not something that has to do with having a husband, and that I had a severe relapse WHILE I was married, so it's not something that has to do with being divorced.  It may be more convenient to blame my marital status, but it's not accurate.  Nor is much of the information being circulated about CFS accurate.  Research shows that anti-depressants are completely useless; research shows that the only treatment worse than psychotherapy is exercise; and these are the treatments that are most often recommended by doctors, because the media keep repeating the inaccurate theories and the evidence of objective physical abnormalities rarely sees the light of day in the mainstream media.  (e.g., Dr. Gow's finding of blood abnormalities rated a sentence in CNN's daytime crawl, but disappeared from the crawl within a couple hours, and was never reported orally on CNN, nor on their website, nor, to the best of my knowledge, in any other TV station or US newspaper)

The truth is covered up by those with ulterior motives.  It recently came out that CDC's head researcher into CFS isn't a virologist, but a nationally-recognized expert on stress.  As the saying goes, "if the only tool you have is a hammer, every problem looks like a nail".  He knows nothing about virology, but he knows how to attribute things to stress, so he talks about what he knows best. 

Perhaps the problem can be solved by putting someone else in charge -- a virologist.  Someone who understands infectious diseases.  Someone who specializes in MEDICINE and not psychobabble.